See Alike in...

Alike App

Browser

FunnyDuckling

595d

Hello! I need advice from those who have an official EDS hypermobile diagnosis. My PCP strongly suspects that I have it and referred me to a Rheumatologist. Unfortunately, the Rheumatologist was very dismissive and told me I could have EDS but wouldn't agree to get me the appropriate scans. What should I do next? Is there a different specialist I could go to?

Top reply
    • L1teralsatan

      589d

      I have Heds and the 2 separate rheumatologists were both very dismissive. I highly suggest looking online for doctors who specialize with EDS patients. Heds (to my knowledge at this time) still doesn't have a genetic marker unless one has been found in the last few months since they started doing research, so its tough to diagnose. I found my doctor on a list on an eds website, he only works with eds patients and athletes and thats it. I'd also suggest asking family members if any of them suffer from hypermobility. Unless they have been diagnosed with HEDS it won't definitely count towards your score for getting a diagnosis, but it can make it easier especially since it is genetic.

    • L1teralsatan

      589d

      I have Heds and the 2 separate rheumatologists were both very dismissive. I highly suggest looking online for doctors who specialize with EDS patients. Heds (to my knowledge at this time) still doesn't have a genetic marker unless one has been found in the last few months since they started doing research, so its tough to diagnose. I found my doctor on a list on an eds website, he only works with eds patients and athletes and thats it. I'd also suggest asking family members if any of them suffer from hypermobility. Unless they have been diagnosed with HEDS it won't definitely count towards your score for getting a diagnosis, but it can make it easier especially since it is genetic.

    • Caitlyn_C

      593d

      i'd also recommend a geneticist. scans are important but they're not necessary for a diagnosis (unless they suspect u have vascular ed's or something like that). the most important thing is to first get genetic testing and be evaluated with the brighton scale

    • Kinter

      595d

      Hello! I got my diagnosis from a geneticist, she did the Brighton Score and family history with me and ordered an ECHO of my heart to rule out vascular EDS.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion